Ends at: 03 January 2022
Asystor kaszlu, ssak medyczny oraz wózek
Asystor kaszlu, ssak medyczny oraz wózek
16 756,00 zł ( 101.61% )223 donors06.11.2019 - 06.02.2020
Zakup ortez i pionizatora - niezbędnych do codziennej rehabilitacji16 756,00 zł ( 101.61% )
Zakup ortez i pionizatora - niezbędnych do codziennej rehabilitacji
9 326,00 zł ( 56.19% )203 donors09.06.2020 - 09.09.2020
Intensywna rehabilitacja9 326,00 zł ( 56.19% )
Spinal muscular atrophy is a deadly illness that happened to our beloved son. Every time I think about the future that lies ahead of Wiktor, I feel terrified… The disease is incurable, it destroys all muscles, including those that make you breathe. These days, Wiktorek’s state is so bad that he needs a respirator for the night.
We want to give our son everything that modern medicine has to offer. We dream of having a chance for him to undergo gene therapy to stop the progression of SMA! Unfortunately, the cost of such theraphy is gigantic... We would like to ask you for support to help our son, knowing that we are asking for a miracle. However, we have to try, we have to believe and keep on fighting, because the gene theraphy really is the only and biggest hope for Wiktor...
Our story might have started like many others, but for us it is all the more dramatic as it concerns our son! Wiktor has two older siblings, and that is why I quickly noticed that he wasn’t developing like his brother and sister when they were his age. He was weak, and one day suddenly he couldn’t lift his head up anymore. Although the doctor reassured me that nothing was happening and I should be glad that I have a calm child, I knew that something was wrong ...
Even before the diagnosis, we started to rehabilitate our son to make his flaccid muscles stronger. It didn't help much. We decided to see a neurologist. He immediately told us that he suspected spinal muscular atrophy, but ordered additional tests. Wiktorek was taken to the hospital, where we waited for the results. When they arrived, I lost the ground under my feet…There, with the test results in front of our eyes, we had no choice but to face the heartbreaking fact that our son, our whole world, was suffering from SMA - Spinal Muscular Atrophy, an incurable disease which, without treatment and rehabilitation, causes all muscles to die, in the end leading to death by suffocation...
There should be a beautiful future ahead of our son, but we know what awaits him - slow death, suffering, a skinny twisted body... We reject these thoughts and are doing all we can, fighting as hard as we can, to slow down the disease and provide the best possible life for Wiktor!
From the day of diagnosis, our goal was to fight for our son. We already know a lot about the disease, which is why we are aware of the seriousness of the situation.
Our son receives a medicine that is reimbursed in Poland. While it won't cure SMA, it will slow down its development and give us invaluable years of life. It has to be administered directly to the spinal cord every 4 months, throughout the patient’s life.
There is also another option, which is gene therapy, given once in a lifetime as a drip. We are monitoring the progress of children who have already received it. We dream about our son also being given this chance, chance for a new life. However, the sooner the drug is administered, the better. On top of that, gene therapy can only be administered to children weighing up to 13.5 kilograms. After that, it's too dangerous for the child. Wiktorek weighs 11.3 kg…
Wiktorek was successfully qualified for the administration of gene therapy. We had a consultation appointment at the Children's University Hospital in Lublin with the doctor who deals with the administration of gene therapy to children in Poland. At the moment, all the current test results permit for the drug to be administered to our son. The most important aspect is the weight - 13.5 kg and not a gram more.
We are concerned about Wiktor’s weight, the display on the scale fills us with fear, constantly reminding us of the time we have left. And yet it’s impossible to tell how fast Wiktor is going to reach the weight limit. How do you convert kilograms and grams to months and days? We must hurry…
Our days are filled with extreme emotions. We want to enjoy our son's progress, but our hearts are drowning in fear and sorrow. Spinal muscular atrophy or SMA is a cruel disease - it takes something away every day. But we are fighting for our child, because what kind of parents would we be if we didn't try to give him a chance for a better life?!
Wiktorek deserves the best future. We are trying everything we can, because we would never forgive ourselves for not giving our son a shadow of hope when there was still time… We would not be able to look our child in the eyes if we failed to succeed... From the bottom of our hearts, we’re begging you for support for our Wiktor. Help us make our dream come true, so that he can recover from this deadly disease. Fight with us for Wiktor’s life…